Paediatric's archives

Researchers should respect the wish of the child and/or parents regarding the return of research results. However, when the health of the child may directly benefit from the communication of results, researchers may, with REB approval, override a refusal to receive results”. Since such best practices are meant to be complementary to TCPS2, perhaps the […]

Most importantly, this brief background reveals the absence of any discussion of the paediatric context by either international bodies or the TCPS2. This is crucial, because while adults can exercise their autonomy by refusing any return of results that are offered (the ‘right not to know’), the same cannot be said for parents who, by […]

Nevertheless, both types of findings remain the source of much debate on the international level. To use but one biobanking example, “[i]mposing the return of results that is applicable in disease research or in clinical trials into the broader resource mission of population biobanks will undermine their longitudinal goals (to say nothing of the creation […]

International norms have long distinguished between different contexts concerning the ‘duty’ to return IFs and IRRs. For clinical biomedical research in general, the Council for International Organizations of Medical Sciences (CIOMS), in its 2002 International Ethical Guidelines for Biomedical Research Involving Human Subjects, provided that “individual subjects will be informed of any finding that relates […]

The recent introduction of next generation sequencing (NGS) into genetic research is spawning much discussion on the return of results, because there well may be incidental findings (IFs). In the past, international and national ethical guidance was largely confined to clinical trials where there could be some certainty of individual research results (IRRs) and perhaps, […]

Many consultations at our PAG clinic are for menstrual suppression in the developmentally delayed adolescent. It appears this group may be a population on which we could focus our TH efforts, because these visits are considered amenable to TH and are a common referral from outside the GTA. This type of consultation does not usually […]

Interestingly, just under one-half of the families offered TH declined. The two most common reasons for declining TH were that the families had other appointments at the HSC or that they preferred a face-to-face encounter. The former reflects the medical complexity of the patients that are often referred to the PAG clinic at the HSC, […]